31 March 2018
Monday 2 April is World Autism Awareness Day. Leeds Green Party activist Jaimes Lewis Moran helps to demystify autism in this article written from his perspective.
Jaimes Lewis Moran
It's said that the true solutions to autism are not to be found in miracle cures, but through the understanding of families and our communities. This article is my attempt to demystify how autism can manifest itself based on personal experience, and hopefully this will lead to a better understanding of 'how autism looks'. I'm very much open to feedback and suggestions both from those with, and without autism. I hope you'll approve.
Here's some advice about autism first.
There's something called 'stimming'; think of people who chew pens, tap their feet etc. This is a subconscious and informal way of using your excessive or nervous energy - as a way of focusing. In fact there's a craze which caught on called 'fidget spinners'. However perhaps a more apt name is 'fidget stimmers'. Ironic how these 'toys' were designed for autistic people but became a fad though eh?
I read a really good quote once, it said something along the lines of "Hear and understand the tone of my words - not my voice". This is especially important to bear in mind with autistics; reason being our voice patterns/tones go a bit random sometimes... (think sound levels in a music studio) this often gets misinterpreted and overlooked. (think of stereotypical action heroes with gruff voices saying "you mean so much to me". Really..? It certainly doesn't sound like it... She replies) Yup, it's hard being a romantic when your voice does random things...
There is usually a slight thought and speech delay, I think the term is called - mutism? Realise that we'll need more time to process and understand things, especially during multiple conversations - be patient. Mutism can affect you randomly, it's like having performance anxiety; everyone is staring, eager for answers but the more you try to quantify what's being said, the harder that speaking becomes. I'll pretty much look like an animal in vehicle headlights. (CRAP! THEY WANT ME TO TALK) If I do manage to overcome this expect my voice to be very quiet, mumbled or even high-pitched.
For a person with autism hiding their interests can be a struggle, it can be done however it's very, very exhausting. The term for this is called 'passing'. Think of how much effort it takes to be a silent witness to your life; going to work/class, not talking or interacting with anything or anyone, trying desperately to appear and be normal. Speaking from experience, this doesn't work and makes things worse. You should own your autism and take pride in the unique ways we see the world. (you'll feel much better doing this, Seriously)
The spectrum of 'obsessions' is much broader than people realise, especially from the perspective of people with Autism; some obsessions can be a standard burst of interest lasting days, other more intense ones could last years... For instance, there's a new tv show on the channel sky about an Autistic doctor, I couldn't stop mentioning this for a few days. Mum told me I was getting too obsessed... I then put this into perspective by mentioning my other, more intense obsession with custom #ElectricCruiserBicycles. In simple terms, I became so interested/obsessed with this ebike subgenre that I started the first design reference pages (on Facebook) for this - whilst accidentally becoming the leading 'expert'. (See what I mean about the spectrum of Autistic obsessions, really puts things into perspective doesn't it?) Above all, I will dwell on things unless an interest is explored or a solution found. That's not a form of compensating is it?
Don't be surprised to see that people with autism have many random information outbursts, it's hard to restrain our enthusiasm for things. I've been told I act like a child at Christmas when learning something new!
Emotions can be more stronger than you realise for those with autism, like for instance if I'm angry.. My feelings of rage can fester and grow beyond what any normal 'neuro-typical' person would experience; it's like walking around with a heat lamp melting your face, it's like being a chainsaw on wheels - all it takes, is contact. I'll either disappear fearful of this feeling or lash out (verbally) at people. (I do apologise later though...) This feeling rarely fades overnight, it can often take days or weeks to disperse. There's not many things which trigger this feeling, but when it happens I'm on a serious war path...
When I find connections with others I rarely hold back, I often overstep boundaries with my lack of social filters. Some people think me unpredictable, inappropriate, rude without empathy but there is a flipside to this; I can talk to strangers, cross unspoken social boundaries and to be honest, I think this approach is needed now more than ever, especially considering all the hate and social isolation in our world.
To be absolutely clear, people with autism are not broken or stupid, just hyper-aware and 'focused' on the things around us. Thankfully this often overbearing ability can be honed into a valuable skill. Don't fool yourself into thinking otherwise! Most neuro-typical people would struggle to be happy doing constantly repetitive jobs, however our brains are basically hardwired into loving predictable routines. (Pretty sure this would come in handy on assembly lines, etc.)
Understandably not every autistic case is the same, some are more severe or better than others (Aspergers) this is why the definition of autism was updated into Autistic Spectrum Disorder. (although, from what I've read on forums not many are happy with that 'disorder' part...) Anyway, what I'm trying to say is that Autistic people can achieve more than we're led to believe by history, this probably explains why so many are being employed in California's Silicon Valley!
I often go into a 'tunnel-vision' mode when I've found something I'm interested in or when thinking about stuff; it's kinda like daydreaming but ridiculously immersive, and distracting - especially when trying to learn! It's not that I'm ignoring the world (or people) on purpose, just that I'm in a sort of 'autism-focused mode?' It reminds me of those stories surrounding the samurai; they'd focus on one thought/action and nothing else. The main downside, is that my body will go into an autopilot mode, this isn't really good when you're riding bicycles or making tea/food...
There's something called 'social imagination' this is something autistic's use in the absence of a previous life experience. Like for example when I started work experience in a supermarket; the nearest experience I had was volunteering in a charity shop. (they didn't approve of this, apparently it's not a transferable experience either...) The same can be applied to social events and relationships. Unfortunately, without these social do's and do not's I'll probably be making things up as I go along - expect randomness X5.
A sensory overload happens when I 'like a computer' have downloaded too much information from around me, every sound, colour and light is magnified. (Busy day?) This can be painful but a few minutes in a dark and silent room usually helps, either that or some painkillers and sleep...
A sensory shutdown (after a sensory overload) is like being on low voltage or mute - everything feels sluggish and numb. I'll struggle to react to things, I'll under-react to pain, be exhausted and desperately need sleep - no excuses. Don't be surprised if at this point an autistic person is extremely grumpy or agitated. Speaking from experience, it's like having no sleep for 30hrs...
Autistic people often have too many preemptive thoughts and ideas at any given time, unless these are faced this can cause long-term autistic insomnia. Thankfully after years of struggling I did find a solution. (nothing to do with medicinal drugs either) Put simply, by sleeping with a thermal Beanie hat; this blocks out all light, keeps my head warm, and better yet - dulls sound! (I recommend trying this!)
As for sensations and everyday situations people like myself either under, or overreact to things. (fear, fabric, insults and jokes) Same goes for new experiences such as different foods, shows, environments, etc. This sends people a lot of mixed signals, and often gets me excluded socially... #Unpredictable
Some of us can have gyroscopic balance problems. Initially I wasn't aware of this, turns out cycling helps; "to keep your balance in life, you must keep moving". Makes sense.
Meeting new people to a person with autism is kinda like pressing the reset button on a video game console - new game, no experience, WHAT IS OKAY?! (PANIC) So please, for all that's good in the world, take the first steps and give us some character references/background info. (this will help more than you can imagine...) Knowing absolutely no one can be terrifying, worse yet it can trigger the flight or FIGHT response to exit this situation. #NotFun
My awareness of sound is all encompassing, every close conversation and detail - at once. This can be quite disorientating... It's not that I want to hear so much detail, just that my brain is hardwired to receive more than the average person. (Loud noises and electric drone sounds can be agony, probably explains why I can't visit clubs or festivals without getting stressed...)
An autistic's thought process is anything but linear/straightforward; it works a bit like computer tabs with many pages and references to draw from at any given time. As you'd expect, this can be a bit random! Quite handy for jokes and politics though me thinks? Only difference is, we're lacking the ability to close these growing pages down...
Reading and understanding body language isn't a natural thing for us - we have to study and learn such things. However it's not all doom and gloom; many people with autism do find loving partners and relationships, people that look past their label and limitations - there is hope, don't forget that.
As I said (and quoted) at the beginning of this article "the true solutions to autism are not to be found in miracle cures, but through the understanding of families and our communities."(Hans Asperger) it's been five years since I was diagnosed with Autism (at nineteen years old) and since then I've learned and overcame so much, I certainly had some catching up to do I'll say that!
Unfortunately, I also realised that like me there's many generations who never received an early diagnosis, never got support and worse yet - inclusion into the workings of our society... I guess that's why I've written this article of sorts; I realised there's too many autistic voices being ignored. I need, (like many other people with autism) for others to see that autism isn't something to hide or run away from, it's something that's quirky and powerful (in the best sense) but most of all, that WE HAVE POTENTIAL!
I once said to a friend of mine "be careful what you say and do, you could be someone's role model someday..." Shame there's not many where I live. I'd like to see that challenged.
Yorkshire & Humber